Ideas on PSA screening and tests on demand

Here, men with cancer or suspected cancer talk about their views on PSA screening and testing on demand.

In spite of the fact that screening is of uncertain value men who have been diagnosed with prostate cancer are often in favour of screening. This is reflected in these interviews, although there are exceptions who would not support the introduction of a national screening programme. Some men were optimistic about treatment and thought that early detection via screening would help to cure or control the disease.

Suggests that screening and testing should be available on a regular basis.

Age at interview 49

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What’s your opinion about doing routine testing for PSA for men?

Well I think it is invaluable, in spite of the fact that there is contrary opinion now that it’s not a good indicator of the level of malignancy or level of tumour that one can have. I think it’s essential and certainly I would argue from my case that it’s the change in the reading that is significant and therefore if it’s done routinely one would see or recognise the change in the system. However if it’s only done once and then not again for another couple of years or so then there is no comparative effect, but if it’s done regularly then this to me is utterly vital.

I think it would be a really good idea to provide screening for prostate cancer on a regular basis because it is the change in the PSA level that would indicate that something is going wrong. And it’s, it’s no good to my mind going to your GP and him saying that you know it’s a fact of life that the prostate is enlarged, and you know we’ll wait and see, and not do anything about it, because there are things that one can do about it and it would be advisable I think.

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Others were suspicious that the government is reluctant to recommend PSA testing because of cost implications. Some men expressed their concern that the government spends much money on breast screening or AIDS while relatively little money is spent on prostate cancer. Other men had heard about research in the USA or Austria which could be interpreted as supporting screening (although the evidence is far from conclusive).

Considers that treatment should be a personal choice and not affected by lack of public funds.

Age at interview 63

Gender Male

Age at diagnosis 59

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I really believe PSA testing and screening should be done, I really believe it. They jump up and down and say ‘Why worry someone to death when we don’t have an effective treatment for it?’ Well why don’t we have an effective treatment for it, basically because we haven’t spent the money on getting it, it’s out there, it’s not the world’s best treatment but the treatments are out there and available in America so back you come ‘We don’t have the money for it. But the criminal thing in 1999 the actual funds given for breast screening were 3.8 million and the funds from the Government towards prostate was ‘47,000.

I believe it should be personal choice of the patient as to whether they have the treatment or not. I don’t believe that someone up in the clouds should stand there and say ‘You’re not going to be tested because I don’t believe it’s to your value,’ you know I believe sitting down here I should be able to say ‘Okay I don’t want to be tested, I’ll take the risk,’ but I want to have the knowledge and be able to be tested.

I think anyone over the age of 55 should request a PSA test on an annual medical to see you know what it is and then take advice from there and hopefully in the next 2 years therell be more information coming out on it in any case.

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Advises others to have regular PSA tests even if not endorsed by Government.

Age at interview 58

Gender Male

Age at diagnosis 57

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I believe that the PSA test, for all its weaknesses and I understand those, it is something which you know it’s outrageous to suggest to people, to men they shouldn’t have one. That’s my personal view and I think the Government is completely wrong and I think, I’m afraid to say, a lot of it is to do with trying to sort of save resources.

That’s one message I would give. Second message is if they’re offering you the choice of whether to have a PSA or not I would say yes and I would say to people who you know had not had a PSA but who just feel healthy, I would say have a regular PSA. I don’t believe in, I don’t believe in Government policy, I think it’s wrong, I think men have a right to know even if it’s difficult to interpret the results, I think you have the right to know and you should know, and if the Government is not going to do it for you, which they’re probably not, then you should do it for yourself.

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Suggests the test should be a national thing to help prevention of cancer spreading.

Age at interview 63

Gender Male

Age at diagnosis 54

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Women get screening tests for breast cancer which has helped an awful lot of people and I think men when they get to 50 they should get these PSA tests as a national thing you know so that they can catch things early, stop the cancer spreading into bones and stuff like that you know. Because theres some people,some men have a thing about the down below parts of their body. They won’t go to the doctors, they won’t tell anybody anything, they wouldn’t tell their wives or anything and I think if this test was made a national thing they would catch a lot of people early and make life a lot easier for people you know.

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Highlights foreign statistics indicating the benefits of screening.

Age at interview 49

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There have been examples of screening which has proved highly successful in the Austrian Tyrol for example, the screening for over 60,000 men was offered free on a 5 year period. As a result of this, deaths from prostate cancer fell by 43% whereas in other cantons of Austria where this screening was not offered death rate remained exactly the same. So this was a pretty convincing indication of the value of screening which included both PSA and DRE tests.

America is much more advanced than this country which is very evident from the death rates from prostate cancer, the 5 year survival rate in this country is about 42%, in America it’s between 85% and 90%, and this is very largely due to far more people being screened for prostate cancer by PSA and DRE and it being caught at an early stage where it is still treatable.

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He believes that the government does not encourage men to have the PSA test because of financial…

Age at interview 49

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Do you want to say a little bit about your views of PSA testing then?

Well, I think that my own view about PSA is that it is a highly political subject and I can understand why it is a political subject. But when we look at it dispassionately, although it’s not perfect, in fact it is imperfect, it is more perfect than many screening tests or diagnostic tests which are used and trusted implicitly by the medical hierarchy and by the patients.

My key point about PSA testing is that it has been badly presented, both to the medical profession and through the medical profession to the general public. PSA testing is a better diagnostic test than the cervical smear, it is a better diagnostic test than mammography, there is only one standard diagnostic test, colonoscopy, only one diagnostic test colonoscopy, which is better, and then only when you have a very good rectal surgeon doing it, or rectal physician. The trouble with PSA testing is that you get a lot of false positives. The problems of false positives have been exaggerated. The average patient isn’t very disturbed; they have to wait 10 days or so to find out whether the tests are truly false positive or whether they are satisfactory. It is trying for him but it is not devastating. I mean you ought to really see ways in which we can get this done faster, not give up the test.

And you say the main reason, [for not doing PSA testing] you think, is the financial one?

And I think the main reason is a financial one because although the actual PSA test is very cheap, the follow-up test for everybody who is positive is expensive. It is expensive in terms of actual costs of materials, in costs of the time of the radiologists, cost of time of the laboratory and it blocks the radiologist’s couch for half an hour or so. And furthermore, if all those false positives were not false positives but actual positives, the theatre, the trouble on theatre time would be very considerable indeed. The urological clinics and lists would be chock-block. Instead of being honest with the world, and saying we can’t afford this but we’ve got to find means of affording it, we tell the doctors and the doctors tell the patients that the test is a bad test. A bad test is a test which gives rise to a great many false negatives and the PSA testing gives rise to fewer false negatives than all those other diagnostic tests which have Government support and Government approval. It’s cash and the men are being allowed to die because people are saving money by allowing them to die.

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Only four men expressed serious concerns about PSA testing and screening. Two men wished they had never been tested themselves, and said that extensive ‘counselling’ should be offered before PSA testing (see ‘The PSA test’, Interviews 3 and 22 for more details). Two other men also voiced their concern that population screening might be unhelpful and do more harm than good.

Comments that screening can cause a lot of unnecessary fear and that we should wait for a more…

Age at interview 49

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To go to total screening, you would terrify so many people that you would cause a lot more harm than good. I’m not saying that if a future test were developed or the PSA test was improved then it shouldn’t be done but until you’ve got a guaranteed test and an assured treatment then I would certainly vote against introducing it.

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Explains why there are problems associated with PSA screening.

Age at interview 57

Gender Male

Age at diagnosis 56

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I think this is a difficult one. I have a medical person in my family who is completely anti PSA screening because having got a positive result you end up in the situation that I’m in, of then being given 4 or 5 options, one of which is doing nothing. Well, if that’s the case, then not knowing, then that’s what you’re doing, you’re doing nothing. But on the other hand, watchful waiting is a little bit more than doing nothing, it’s actually knowing and monitoring, and therefore being in a position to make decisions as to what treatment you might go for.

So I would say on balance, relatively high-risk people, men of a certain age, men with certain backgrounds & I believe for example, my sons probably after the age of 45, it might be an idea if they were screened, but I think to screen the whole of the male population, and then simply be saying to them, ‘Well, actually were not quite sure what to do about it,’ is probably not terribly helpful to people, and for a lot of people might be quite destabilising. And I do understand that an awful lot of people end up dying from things other than prostate cancer, and then if they have an autopsy they find they had prostate cancer all along, so knowing that you’ve got prostate cancer and you’re not going to die of it is not necessarily very helpful.

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Due to the uncertainties surrounding PSA testing and treatments for prostate cancer, it is very important that men who request a PSA test receive balanced information about the pros and cons to assist them in making an informed shared decision about being tested. This information should be provided by their GP or healthcare provider before the PSA test is carried out. The Prostate Cancer Risk Management Programme has written a Patient Information Sheet on PSA testing that should be given to all men considering a PSA test.

See more about experiences of PSA testing.

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